To be irritated by what this sonographer said?

[maja00]

I recently had my 12 week dating scan. I declined the nuchal translucency scan, so was just going for the standard dating/measuring.

As soon as we got into the room the sonographer confirmed that I had declined the NT scan. The scan went as expected, baby looks fine etc.

At the end of the scan the sonographer said "I know you declined the NT scan, but I had a quick look at the baby's neck and it all looks normal. I would tell you if there was an obvious abnormality there".

Now, is it just me or is this not really in the spirit of us declining that test? If the sonographer had said it looked abnormal, then we would have been in exactly the position we wanted to avoid

I understand that the sonographer was trying to be helpful, but AIBU to be a little annoyed by this?

This is not a consent issue I don't think...unless OP had said she does not want to be told if the baby has congenital heart defects or other gross abnormalities...this is not really possible as it is the point of the scan.

The problem here is lack of understanding on the OPs behalf that the scan would also look at the nuchal area to assess for congenital heart defects and the scan , in general would be looking for health vs abnormalities. This is what the sonographer was saying...she knew OP did not want to know about Downs risk but as part of this scan her remit was to look at the nuchal area as cardiac screening.

I agree with maternal consent and autonomy being very important but I don't think this was an issue here, in fact I think the sonographer knew what she was doing and conveyed that, however the OP had not known or understood what the scan was going to entail and was looking for. This could be better explained in the booklet perhaps.

Oops and again from me congratulations

Hmmm......I declined all testing. ....my DS is autistic which you cannot test for anyway.

However if he had been born with any of the conditions tested for I would have rejoiced anyway because he was very wanted and planned. I most certainly would NOT have seen him as "another special needs child about to enter the world".

And also expected my wishes to be respected for not testing in pregnancy which they were.

OP...YANBU.

OP YANBU you declined consent for a test and the sonographer went ahead and carried out the test anyway. I would complain and wouldn't care if she was disciplined because of it. She acted unprofessionally and unethically by carrying out a test without your consent.

Leaving thread... You had a right to decline NTS and that has been respected... You wanted the 12 week scan but maybe didn't understand what it was for and have misunderstood that the comment about the nuchal area was in relation to heart screening

Information is power. Read up and find out what the later, detailed scan is all about ( if you are having it) and then you know what it will tell you.

Fair point givemestrengthorlove

I wouldn't have thought that either, JakeBullet. I just can't get why being told things appeared to be ok was such a violation of the op's rights to decline testing.
The sonogropher looked at the neck folds, as she's required to do as anomalies here can point to conditions other than ds.
And, given that any scans can be an anxious time for a woman; thought she'd tell the op that everything looked fine. She probably imagined it was a kind, reassuring thing to do. No disrespect to any disabled children intended.

I just want to add some information to this in case people are looking at the NT testing.

I am not a professional but just going through a very large nuchal fold diagnosis for the second time.

The nuchal measurement is done in mm. Anything over 3.5mm (in our area) is deemed to be outside 99% of a distribution of normal nuchal thicknesses, therefore unusual and deemed large enough for a referral for diagnostic testing without combining it with the blood test. Given the sensitivity to these numbers, I find it difficult to believe a sonographer was giving anything other than a 'the baby doesn't seem to have an absolutely massive nuchal fold' comment. Extremely large nuchal folds can also indicate problems with incompatibility with life, helping to prepare parents for what they may have to face.

The nuchal measurement is not just for downs. The primary focus of the NT combined tests for for the three main trisomies (chromosome issues) which are Edwards, Pataus and Downs however a cvs or amnio will also run a full karyotype against most common chromosome abnormalities.

A high nuchal measurement can also be indicative of heart problems that would not necessarily be picked up by an anomaly scan or neural tube defects.

We had 2 foetal ecg's prior to the 20 week scan by a foetal heart specialist and additional abnormality scanning using specialist equipment that isn't available at our local hospital.

I have had one cvs and would not have another, however there is now a non invasive test called Harmony (only available privately at the moment) which has a 99% confidence in correctly identifying downs, Edwards and Pataus. It is expensive but I wanted to make sure that people on this thread understand that if (like me) you wouldn't opt for a cvs or amnio because of miscarriage risk, then there are still benefits to having the nuchal fold measurement to access the additional scans and pay for private testing if possible.

Also the risk of a late amnio (after 32 weeks) carries much less risk if invasive testing because of miscarriage risks wasn't an option but you prefer to know prior to giving birth.

Sorry for the essay but hopefully that may help someone with these difficult decisions.

Good to see that there are plenty on here happy to ride roughshod over a woman's right to consent to something happening to her body because hey it was good news right . As an adult woman with capacity to make decisions my consent should be sought at all times for any procedure or testing and if that consent is withdrawn for whatever reason the procedure does not take place.

I can't resist popping back in to say that I imagine the sonographer probably like the op and just did a fairly kindly thing in reassuring her that all looked well. We all know not everything can be tested for but I think we're talking about what can be tested for. I don't think anyone here is suggesting any discrimination against children with disabilities. I thought the op asked ought she complain and my response was what? complain about good news? and the news your baby is well and alive is good news. Poor bloody sonographer probably thought she was doing the op a good turn, yes it wasn't strictly professional but she's a human who probably felt a bit of compassion for a pregnant woman.

Should add am not a sonographer and do not do obs and gynae so response in this thread is purely as a member of the public after several pregnancies a billion scans and one nuchal trans test but done privately before brought into NHS and more accurate than the one currently offered on the NHS

Good luck with your pregnancy OP :)

Personally I would decline the blood test but want them to have a look at the ultra sound. With the first two I remembered to make my feelings known about the blood test (I am over weight with a blood condition - therefore the test would probably give me a screen positive result), but forgot with DC3, I had to have so many blood tests each week it was easy to get confused.

I had a positive result 1:60, and spent the next 6 months declining any further tests. The result was a healthy baby girl, but I could have done without the stress.

It is possible that they thought that you would want a little reassurance without the blood test, I know I did.

The trouble I've had with this thread is that although, the OP declined the NTS, she went for the dating scan and thus, the sonographer had a duty to inform her of any abnormalities. The OP did not have the NTS again her will. HOWEVER, there is no doubt that the OP was not fully informed about the purpose of the scan and that was wrong. She should have been fully informed before she went ahead and then she would have been able to make a proper choice.

Agree with candy

She never said owt about abortion. Some people (granted not OP) want to know not so they can terminate but so they can perhaps prepare for possibility of chid with disability. So don't get all 'appletarts would ave me abort my baby' because that ain't what she said.

Well, being told everything looked fine wasn't going to provoke that reaction, was it? I'm actually a bit at the op's claim that the sonographer really said "and I'd have told you if there was an abnormality".

Obviously the op knows what happened and I don't, but why would you say that? It reads like a bad script, but what it does do is give credibility to op feeling her wishes had been violated by this throw away comment; presumably prompted by nothing more than simple goodwill.

"Some people (granted not OP) want to know not so they can terminate but so they can perhaps prepare for possibility of chid with disability." that is a very naïve and inaccurate assumption given that 93% of pregnancies where downs syndrome is detected are terminated.

At the end of the day the op asked not to be told whether there was a perceived abnormality (and at this stage it is a perceived abnormality which would require further testing), and that is her right. To those saying that the hospital are just doing their job, where does it end? when op goes in for routine blood tests (having declined screening for downs) would it be ok for the hospital to order those tests anyway? Or to call op in for a routine appointment and then proceed to do an unrequested amnio?

And what people seem to have lost sight of here is that downs is by no means the be all and end all of disabilities. The people I know whose children have the worst disabilities were not able to have any kind of screening and were completely unprepared. A clear downs result does not equal a healthy baby - it simply means your baby doesn't have downs. But you are just a botched birth or a car accident away from having a disabled child. People need to get away from this absolute terror of downs syndrome and the belief that everyone else should share that terror and have the need to know, because not everyone does.

I had no testing during my pregnancy because I had no desire to know whether or not I would be carrying a baby with downs or any other condition (rectifyable defects would have been picked up on 20 week scan), because I would never have terminated a pregnancy if a baby had a disability. And as soon as you find out re is massive pressure to terminate, from hospitals, from friends and family etc, and if a woman doesn't wish to terminate then she should have the right to choose not to have the tests and not to be put in a position where termination is a consideration.

For some people hearing that your child has a disability feels like the worst thing in the world. For other people the need to know happens at the need to know, i.e. when you have a baby and can love that baby regardless. And for some people the news that your baby doesn not have downs syndrome cretes nothing but a false sense of securyity Clear downs result does not cary the guarantee of a non disabled child.

This thread highlights the lack of counselling given regarding combined screening and the lack of understanding on the parents part. You cannot tell by looking at the nuchal thickness that your baby does not have Down's. The measurement is combined with the blood test to provide a risk. Sonographer's have to inform you if the measurement is greater than 3.5mm as this could indicate an abnormality other than Down's. They also have to inform you of any abnormality picked up at the dating scan. Perhaps what she meant was, it looked less than 3.5mm, therefore hopefully reassuring you. This should have been part of your counselling. If a sonographer could glance at the baby's neck and give a diagnosis then there would be no need for a multi million pound screening programme. Also, if screening midwives did their job properly,
i am sure more women would understand what they were actually consenting to as a huge percentage confuse it with having an amniocentesis "is it a needle in the belly coz I don't want that". No, it isn't and if you wouldn't have an amnio', then don't bother having screening.

I've never read anything so unreasonable. Before you jump the gun, maybe you should read the following and actually think about what you're saying.

Firstly, this is a very brief explanation of how Down's screening works:

It's a combined test. Emphasis on COMBINED. Your bloods are combined with the fluid level in the back of the neck, along with a whole host of information such as your smoking status, ethnic origin etc etc.

This gives you a risk. A probability of your child having a chromosomal condition. The fluid in the back of the neck CANNOT give this information alone, and even if you don't consent to Down's screening, that fluid, if raised, can be raised for OTHER reasons that aren't necessarily genetic.

Your child could have a fatal heart condition, or may never be able to fully develop a lymphatic system. You would be told, consenting to Down's or not, as the fluid measurement could be higher for reasons not directly linked to Down's. So, whether you want screening or not, the sonographer would have to say if it was abnormally high, in the same way they'd have to tell you if there was a part of the brain missing. You are still technically being screened for health when you have these scans, just not down's if you don't consent to that element of it. It isn't a baby bonding service. It's a serious medical exam.

So, in being told the fluid is normal, it's the same as being told the brain looks good so far, the arms and legs seem fine etc etc. You haven't been told you that you don't have a child with Down's syndrome. At. All. You may very well. You've elected not to know, and that's your choice. It WAS respected.

This sonographer may not have worded things in the way you wanted, but let's be clear, no harm has been done and you have not been screened for a chromosomal abnormality against your will. You do have a choice and it has NOT been violated. THAT'S the important take home message here, if you'll be even the slightest bit reasonable.

Just so you know, for your twenty week scan, there are 11 life threatening conditions that are assessed. Even if one is found, whether it is present as an isolated structural abnormality or due to a Trisomy that you don't want to know about, no one makes you do anything. You always have a choice. These systems are here in place to support families and provide them with all the care they need for whichever path they chose to go down. It's an amazing service that is often taken for granted.

The sonographer would have looked at the brain, beating heart, limbs, they're always assessing the back of the neck, as if it is above a certain mark they HAVE to tell you, and no, that is not telling you that your child definitely has Down's syndrome. It's flagging a concern, of which you would be counselled and THEN if you WANTED you may be screened, on top of a whole host of other things. The fluid could be raised FOR OTHER REASONS.

But no, assume the Sonographer violated your choice by telling you your baby looks healthy.
That's obviously the reasonable thing to do.

A someone who has worked in heath care and has a young relative who had a problem flagged, I truly feel like I can appreciate this matter. It is very important to me. Be glad your child is healthy. And no, you don't know if your baby definitely doesn't have Down's syndrome just because the sonographer said the neck looks okay.

Unbelievable.

This thread is ancient!